Antenatal Screening

The fetal medicine, sort of, the people, the support team in fetal medicine were really good. There was this wonderful lady who was, I can't remember, just a kind of supportive sort of role - I mean, she was a nurse and, you know, had a lot of medical knowledge - but she was so supportive, sort of emotionally she was really like, 'I'm there for you.' 

And the midwife who looked after us throughout the termination process. Again, you're sort of, you're not sure if you're going to come up against sort of resistance from medical people that, 'Oh, they've made the wrong decision, you know. You should be pro-life under any circumstance', you know. So again, you sort of go into the hospital not knowing what you're going to face, really, I suppose, there.

And you know, again, you're worried about meeting other people who might be pregnant and in the hospital and might have known what's going on behind your closed door and etcetera, etcetera. But we didn't come across any of that really. It was, they were great. So again they were, it was support all round. 

I don't remember any bad experience of that whole bad experience, if you see what I mean. It's just, it was as good as it, as good as such an awful experience can be, I think. I think having read about other people's experiences, we certainly, you know, were very well supported.
 

The, I mean, the staff in the maternity unit were just, were just amazing. I mean, I can't understand how anyone would want to do that as a job. It's just horrendous, it's absolutely horrendous to deal with someone like me who's going through it, and to try and be calm and professional.  

But the midwife that was there that actually delivered our baby was, she was just lovely. And, I mean, I think she's an angel because she cried with me. I mean she held my hand and she cried, and for her - I said to her, 'You know, you shouldn't be doing this,' and she said, 'I can't help it. You know, I just, I get involved with my patients', and you know, she was just amazing, absolutely amazing.  

So, I can't fault them, I can't fault the care at all. They were just, you know - and when I've heard of other things that other people have gone through, which has been horrendous compared to the care, they did everything they could.
 

The day of the termination. I think I had had some preconceptions which subsequently turned out to be completely incorrect about what would happen to me on the day of the termination. And I had wrongly assumed that I would be treated as a special case. 

So I had wrongly assumed I would be dealt with as an individual, and that this process would be carried out by people who knew the background and who would treat me sympathetically, and that really the experience wouldn't be too bad. But unfortunately that proved not to be the case.

Go on...

So the Wednesday, Wednesday was termination day at the local hospital, so that's what I was waiting for. I wasn't waiting for a particular set of individuals, or the particular set of skills of knowledge, or a support system or anything like that. I was just waiting for the termination clinic. 

And you know, I strongly believe that whatever a woman's reasons for termination that she should be supported and I strongly believe in women's rights to choose. So it's not as if I went into that thinking, 'OK, well, I'm justified in going for my termination, whereas all these teenagers here who accidentally got pregnant, they're not entitled to the same level of care and support. 

But, I don't know, maybe I do have certain prejudice, prejudices underneath it all, because I did feel insulted almost that I was being treated exactly the same as the teenage girls who were in because they'd accidentally got pregnant and that I got. There were no kind words or anything, no, there was nothing there to suggest that anyone realised just how difficult that day was for me and my husband. And my husband was the only man on the ward.  

I remember I was crying on my way into theatre and the theatre nurse said, 'Come on, don't worry. It will all be over soon'. I said 'But I don't want it to be over'. And I just felt completely misunderstood that day.
 

If I can sort of compare it to, I don't know, taking a suicide pill or something like that. It was so final, really. Because it was just like, 'Right, well, here you go.' And I was just sat in this room, tablet on the table and a glass of water and I just knew that - I just couldn't do it. 

I just kept sitting there looking at it and thinking, 'Right, I'll do it now', and then, you know, something's holding you back and you're sort of like, 'What if it's wrong?' That was one of my first reactions was, 'What if they've got the result wrong? What if they've got me mixed up with somebody else?' you know. I suppose everybody goes through that, really.

Did you talk to them about that?

Yeah. And she showed me the fax and everything that had come through and, you know. But, I mean they did explain that it was the particular Down's syndrome, the trisomy-21, that can happen to anybody, that it's not anything that either or us could have done to stop, prevent it, or anything in the family or anything like that, you know. It is that particular one.

How did you manage to do it in the end?

I don't know. I don't know how I - you know, there was one little bit of me in the back thinking, 'Maybe we could cope', you know. Because you do, you clutch at straws, don't you? And think, 'Oh, maybe it wouldn't be that bad, you know.' And that we'd been told it was a boy by now, and, but I don't know. 

I wasn't thinking straight anyway, but I know there was still part of that at the last minute. I was thinking, 'Oh God, what if?' you know. But as I say I knew once I'd taken the tablet that it was too, you know, that was it. It was too late and I just had to in the end. But I don't know how long it was before I did take it.

And what was your husband saying at this point?

He's very quiet, you know. He keeps a lot to himself. He doesn't talk about things, really. Obviously he was as upset as I was inside, but he just kept reassuring me and saying, 'Look, you know, we have discussed it, haven't we?' And, you know, just pointing out the sort of things again about how difficult it would be. 

So yeah, that was - in a way, I mean I'm glad in a way, because if he'd have been there saying, 'Oh, I don't know', and, you know - I mean, it would have been impossible then to take it. So it was just as well, really, that he wasn't like that at the time.
 

So we talked about all of that and prepared ourselves for it all and, I don't know, it didn't become, I think once we'd made, I think it was the Tuesday evening, when we had made the decision that this is what we were going to do, it didn't become emotional any more.  

It was suddenly, a huge weight had been lifted off our chests, we could, so I think that was the first proper night's sleep that we got apart from obviously the one where we didn't sleep very well at all because we were so emotional about everything. And, you know, had a really good night's sleep, and it was a huge weight being lifted off our chests because we had decided that this is what we were going to do, and it was just finding out when it was going to happen. 

And, I don't know, we started enjoying, because we'd made a decision that wasn't emotional any more and we were looking forward to seeing our baby, and it also turned into the fact that it wasn't us losing a baby, it was the fact that we were, in a way we were going to see our baby before anyone else could ever see their baby.  

We had some friends that were pregnant at the same time and they were due the same time, I think they were due a week or so before us, and it was almost like nice to think that we were going to see our baby before they were going to see theirs. They still had to wait another 20 weeks, and we could see our baby straight away. Because it's always in the back of your mind wondering what your baby looks like and it was, and it was nice to think that it wasn't anything negative now, it was something positive to look forward to.

So obviously going away, planning names, choosing an outfit and basically looking forward to the Saturday rather than dreading it, so it became a positive thing to do. Yeah, so it meant that we could enjoy the next couple of days I suppose as a family, because it meant that, you know, there was three of us kind of being all together really, and enjoy that time while you had it together.

It was a bit hard still, because obviously I'd taken this progesterone tablet to stop it, stop the progesterone. It was always in the back of my mind about whether the baby was alive still, because from the time they told us that we had the anencephaly to the time where we'd actually made, taken the tablet, she hadn't actually moved a lot. She was, she hadn't mo-, I hadn't felt her move, and I thought, well, as soon as I'd taken the tablet that she'd died.  

And then when we went in on the Saturday I asked them just to confirm whether she had passed away or whether she was still alive, and they did a Doppler scan and they said no, she was still alive, her heart was still beating, which was nice again because it kind of gave us something up in the day to keep us up, you know, kind of feeling like we were still kind of looking forward to giving birth to this baby.
 

Mother' There were good parts and bad parts. They got a lot right. There were some things that were wrong. The person that gave us the tablets, I don't think was equipped to deal with us emotionally. I was under the impression that our baby would be put to sleep somehow, that this, that her heart would be stopped before I was induced.  

And I thought maybe these pills did that, as well as ripen my uterus. And I said, 'Now, this is going to put the baby to sleep, right?' And she just said, 'No'. And I said, 'Well, I was under the impression that's what was going to happen'. And she said, 'No'. And that was it. And I felt, we felt really judged, actually.

Father' I think the other aspect of that was that the lady who'd been dealing with matters for us at the hospital ever since we'd started to realise there was a problem wasn't there that day, and therefore we had a completely different person. And this particular individual was not the midwife who would normally deal with these sort of cases and, as we said, you know --

Mother' The bedside manner...

Father' -- she wasn't equipped to deal with it at all. It was, 'In, take the tablets, see you in a couple of days.'

Mother' 'Take, take your blood pressure, and watch you for an hour and then send you home'. And we needed someone a bit more compassionate. It, yeah  - well, I felt really judged. Which just wasn't helpful, it wasn't useful at that time. Because we'd made our decision and we needed someone to support us in that.

What did the ARC literature say about the tablets?

Mother' It did say that it would ripen your womb. And I had said to the consultant, 'I want my baby to be euthanased before I have her'. And I think he misunderstood me, and I misunderstood him saying, 'It will'. But he may have meant that when you go into labour a 17-week-old cannot tolerate those kind of quick contractions, because when they induce you when you're terminating they just get it going. 

Instead of if, you know, a live baby they have to be very careful about having contractions too quick together. And they don't really worry about that when you're, you know, having a termination. So I think there was just a misunderstanding. I now know that they will give you a shot in the umbilical cord to put the baby to sleep if you're past, I think, 22 to 24 weeks. They do that.  

I think it's 24.

Mother' Yeah. And I wish that I could have had that option, actually, because I'm still haunted by wondering when she passed away. I think I would rather know that she was put to sleep nicely, if that makes any sense.

Father' And then sort of going forward we, you know, the pills were taken on the Monday and then we had 48 hours to wait and --

Mother' With no support.

Father'  -- you know, we, you're just left there.

Mother' You're just sent home.

Father' You know. And you've already started the process. You can't reverse it, and you also can't acce

On the Thursday I had to go, I had to phone another hospital actually, to have the feticide, as they call it, performed. And I was petrified, absolutely petrified about that, because they'd said to me, you know, that they'll give an injection in his heart, and I couldn't - I was having nightmares, I hadn't slept that week at all - and I couldn't understand how they would put a needle in his heart when he was moving as much as he was.  

And I just thought, they can't chase him around and do that. They just can't do that, it's just barbaric. And I made, we made the appointment for the Friday morning at 8 o'clock, and we had to go to this particular hospital which was further away and we got there really early and we sat in the car park, and I didn't want to go in. I just thought, 'I can't, I can't do this, I can't, I can't kill my baby. I can't let anybody do that.'  

And there were sort of beautiful grounds of the hospital, so we walked round them and we said good-bye to him. And then we went into the hospital, into the maternity unit and again, I mean this is sort of every time you go in and you sit in a waiting room surrounded by pregnant women, or new babies, and we were left there for about 25 minutes with half a dozen pregnant women around us. 

And it was just horrendous. And I just don't understand why they don't think about that, and put you somewhere else or meet you the minute you get there or just something, because it's just so painful. Anyway, we were met by the chap that was going to do the procedure, who was just amazing and I was panicking and I was shaking. 

And he took us into the room and he said - and I didn't, I couldn't get my foot over the door, I couldn't go in the room - and my husband and he kind of grabbed my arms and took me in and they lay me down and he said to me 'We're going to give you an anaesthetic which will minimise the discomfort to you, and we will inject the baby through the umbilical cord, so the baby will feel nothing at all.'  

And having been told one thing and then this chap telling us something else made me so pleased. I mean, it was ridiculous, really, but I was so relieved that the way they were going to do it, the way that he said that they were going to do it. 

And I lay down on this, again, on the couch and they had a screen and I don't know what they were doing. And I probably had my first ever out of body experience, because it was so awful and I couldn't, I couldn't be there. And I remember walking round an island in the Maldives, and the sun was shining on me and it was beautiful and I just, just disappeared, absolutely disappeared. 

They were very quiet and they were, I didn't feel a thing, I didn't feel anything. And then after about 15 minutes they just said to me, 'it's all over,' and then they walked out the room and left us, and I screamed and screamed and screamed. And then a nurse came and took us out and put us in a sort of separate room and we just, we must have been there for, I don't know, about an hour, not believing what we'd done and just feeling wretched.
 

I went back to work the following day, and then the following day we went and checked in for the termination. And I was given a pessary, and nothing happened for hours and hours and hours, it seemed. And we were given, I was given more pessaries, and still nothing was happening until the evening. And then my waters - I had quite a lot of pain, which I was given good pain relief for. 

They gave me a drip into my hand for morphine. And then my waters broke and everything seemed to stop. And then it just seemed just to go on for hours and hours and hours. And then various doctors and consultants would come down and check me out and say, 'Oh, nothing's happening.' And then I went on to a drip to help speed it up and it was going up by half a - I don't know how they measured - but it was going up by half every hour. 

And then at the end of the day, it was about 10 or 11 o'clock at night, and a lovely doctor came down and just said, 'Oh, this is ridiculous. Turn it right up. You might feel a lot more pain, but just use the morphine. You just can't carry on like this, indefinitely.' So in a way that was great - just turned it up and I didn't feel any more pain. 

Then he came back down again at midnight - oh, what had happened in between? Some - yes, I'd been examined quite a few times and I remember one doctor saying, 'Oh yes, I can feel the products of conception,' which was awful. Oh, that really sticks in my mind.  

Oh no, 'I can feel the products,' that's what she said. And then this lovely doctor came back down again and he just said, you know, again he was one of the people that acknowledged my partner, and then he said, 'Right, we're going to just pull the baby out' so, because it was half-way there, so that's what he did.

So, a bit mixed, the kind of care you had?

Mixed care.

Some sympathetic, some not so sympathetic?

Yes. A midwife was quite, some of them were, some of the nurses were lovely but midwives tended to be more dismissive. One midwife came - I'm not sure if they were aware why I was having a termination - but I felt one was quite, it felt like she was frowning at me. 

And she came down with the gas and air and said, 'Oh, don't you know how to use it?' And I said, 'Well, no, you know, I haven't got that far in my ante-natal.' And she showed us and was very brusque and, you know, left quite quickly. But then the nurses were good. It was a mixture, it was a complete mixture.
 

I think it was the Wednesday, yeah, I was due for admission on the Wednesday morning. So I'd packed a lot of things the night before, wondering, when you read pregnancy magazines, 'Do I need to pack things like this?' and all sorts of different things. 'What will I need for labour?' and I didn't really know, so I packed really what a mother would pack for a normal labour.  

And we went into the hospital Wednesday morning, again for an early, I think 9 o'clock again. We got there for half past eight and went into the antenatal department, which nobody knew I were coming and nobody knew where I were supposed to go or whether I were supposed to be in the antenatal unit or in a gynaecology unit. And it took them about half an hour to find out that I was supposed to be going to delivery unit.

I didn't realise at the time but I've written to them since and found out that it were lack of communication from a consultant that was told I was due for admission, but he never actually told the delivery unit that I were going to be there. So, then we got admitted, I think it, I don't even know what time it was, into the delivery unit, into a room on our own, which the doctor who was supposed to be giving me pessaries to induce labour were on his rounds, seeing to all mothers and their babies.  

So it were about another hour and a half until I actually got started off and induced with the pessaries, and then every three hours taking oral medication to bring on labour.

Was that all because of the initial problem of communication? They just weren't expecting you so they hadn't got someone lined up?

Yeah. Since they've said, you know, if they'd have thought about it, it would have been more beneficial for him to come to see me and, you know, insert the pessaries before doing his ward rounds with the healthy babies, and, you know, there were no sort of problems on the maternity unit, that it would have been beneficial for him to come to me first, had they have thought. And they admit to a lack of communication, you know, to say that they didn't know I were going to be admitted that day.